Hello everyone!!!

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Offline Bobby

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Hello everyone!!!
« on: September 01, 2006, 10:32:27 PM »
Hello, My name is Bobby and I was diagnosed with Thal major when I was 7 or 8. I am now 30 and classify myself as more of a Thal intermedia.  I see a hematologist about once a year and he seems to agree.  I am very high energy now, but as a child I was very sick and tired most of the time.  I had to have transfusions about 4 times a year until I was about 12.  I had and still have enlarged spleen.  After many years of taking iron pills I almost had to start iron chelation therapy.  That didn't sound good to me so my doctors decided to let it happen naturally.  My sister and I had our gallbladders removed together.  At about 13 I got into sports mainly High School Basketball and backyard football and have been pretty active ever since.  I've never been the fastest or strongest but I keep up.  In 1998 I had a biopsy on a baseball sized mass in my chest, which turned out to be muscle tissue created by my body to help in red blood cell production since then mri's have shown more tissue forming in my back close to my spine.  I haven't been affected negatively by it yet. For the last 2 years I have been trying to gain about 20lbs @ 6'2" and 165lbs I was pretty thin.  I have been able to get up to 175lbs, but as soon as I stop exercising I lose weight.  That is the reason I am here, I started reseaching my illness about 6 months ago to see if there was an easier way and in the process I have learned so much. I had no idea that this affected so many, my doctors always treat me like its the first time they've seen a low blood count(normally an 8.).  I am glad I found this site and look forward to visiting and learning from you all.  Sorry about the long post, I never get to talk to anyone about this stuff.  :biggrin

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Offline Manal

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  • mother of thal intermedia child
Re: Hello everyone!!!
« Reply #1 on: September 01, 2006, 10:57:10 PM »
Welcome Bobby to the site.     :flowers :flowers :flowers

You are going to love it in addition to a lot of information that will help you to understand what  thalassameia is.  I joined this sit a month ago and all of our friends here gave me a lot of support more than you can imagine.

Now you have got a lot of friends to talk to in any thing you like  :five

Regards

Manal

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Kathy11

Re: Hello everyone!!!
« Reply #2 on: September 02, 2006, 12:30:26 AM »
Hi Bobby
Welcome :wave
This site is a wonderfull place to surf ,it is full of special ,kind and caring people,you are in good company :biggrin
Kathy

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Offline §ãJ¡Ð ساجد

  • Beta Thal Major
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  • 1991
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  • اَسّلامُ علیکم Peace be Upon you
    • Islamic Resources
Re: Hello everyone!!!
« Reply #3 on: September 02, 2006, 04:45:58 AM »
Hello Bobby!

Welcome to the site. Please feel free to ask any question that you may have in mind.

Take care!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
Web Site

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Offline Maako

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Re: Hello everyone!!!
« Reply #4 on: September 03, 2006, 02:49:00 AM »
Hi Bobby

Welcome to the site. :smile2 Its a great family we have going on here...  :clap Feel free to talk as much as you want about anything you have in mind about thalassaemia.

tc and regards :flowers

 :heartpink Maako
Maako

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Offline Bobby

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Re: Hello everyone!!!
« Reply #5 on: September 03, 2006, 04:40:21 AM »
Thanks everyone for the warm welcome, I look forward to chatting with you all. :hug

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: Hello everyone!!!
« Reply #6 on: September 03, 2006, 04:49:25 AM »
Hey Bobby,

Glad to meet you. You're in the south where thal is almost unheard of. I'm not surprised doctors had you taking iron. They just don't know any better and often give wrong advice and treatment. What happened with you answers a question we often hear here. Taking iron supplements got your iron so high you almost had to chelate. Like many metals, iron is needed by the body in low doses but is dangerous when it builds up. I'm glad you like tea because drinking tea with meals will inhibit iron absorption from your food and more iron is something you don't need.

I was wondering where you've gotten treated in the south and if you feel your care now is adequate and do the doctors understand thalassemia. It is so rare in that part of the country that patients are often misdiagnosed and given the wrong care.
Andy

All we are saying is give thals a chance.

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Offline Bobby

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Re: Hello everyone!!!
« Reply #7 on: September 03, 2006, 06:24:59 AM »
Hello Andy, It's good to finally chat with you.  I was born in a very rural area and although I had a general practitioner there were no specialist or readily accesible information like there is now.  My doctor's basically pricked my finger and checked my spleen.  If my Hb was under 6 or seven I got a transfusion. My uncle who is in internal medicine suggested a specialist.  I'm not sure at what age I started to see a speciaist, but for treatment my parents took me to The Children's Hospital in Birmingham and UAB's Medical Center as I got older.  I think the treatment I received was very good.  UAB has one of the best medical programs in the country.  The college and the hospital are like one huge city in itself.  Here's a link to UAB's hematology and Oncology Center.  I currently see a hematologist at Brookwood Medical Center in Birmingham who seems to be at ease with my level of health right now.  We have discussed Splenectomy, but I think I'm fine keeping it for now.

http://www.health.uab.edu/default.aspx?pid=10027

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Offline Andy Battaglia

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  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hello everyone!!!
« Reply #8 on: September 03, 2006, 06:59:49 AM »
Hi Bobby,

I'm glad you found the UAB medical center. The large university centers and children's hospitals are usually the best places to be treated for thal in the US. I hope you'll be willing to add a listing for UAB med center in our Treatment Centers section. It is so important for a person looking for answers to find a good center.

I encourage everyone to add to our listings as we create a word wide  listing of thal centers.
Andy

All we are saying is give thals a chance.

 

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